gaile's Cancer Blog

June 30, 2008

Well, it was good for a while!

Views: 102

I had 4 months without treatment. My doc wanted me to have some “normal” time in my life. She said my cancer was pushed back and didn’t seem to be growing with any speed, so I could afford some time off.

Well, she and I were both shocked. I had a PET scan on June 17th. I saw my doc and got the results on June 24th. I had been feeling better as the months went by. I kept sleeping a lot but less as time went by. My doc said it was probably the chemo that was causing me to sleep and that sometimes it takes several months for your body to heal from it. I had some pain in my back and my pelvis, but my energy was better and I was getting my house ready to sell.

Then the RESULTS. She held the PET scan results out for me to see. I took one glance at the pictures and started to cry. My liver and my pelvis lit up like a Xmas tree. There were tumors all over my liver (which had been tumor free in March – after having 4 small ones that responded to chemo). There were big ones and little ones of varying intensity. Apparently the radioactive iodine uptake was high, meaning they are very actively growing tumors. I also had had a slow growing tumor in my uterine wall before. Well now it is much bigger, much more active, and gave birth to another tumor almost as big. I also had a new one on my lung. I still have to check out my brain with an MRI which has not been scheduled yet.

I have just gotten hair, for the second time. And now I will start chemo again and lose my hair for the third time. I will also get to retain fluids and swell up like a water balloon. I am to be the matron of honor in my best friend’s wedding on July 19th so we decided to wait a month to start treatment. But all weekend I worried that I shouldn’t wait another month, so I have a call into my doc today to ask her if that is wise. She supports living life and working chemo around your experiences, not working experiences around your treatment. But I am not yet ready to take the risk. I am so sad.

I was going to take my son to Honolulu on Sept. 8th to meet up with his group that will go to study in Tokyo for 11 months. I probably won’t be able to go. I also have a high school reunion on Sept. 20th. I have never been to one and it has been 38 years! My cousin is flying in from N.C. (I am in Calif.) for 5 days to attend with me. It is a 3 hour drive from where I live, so it would be a long day. IF I can go I will look so uck, bald and puffed up. Right now I look pretty good. Complain, complain. Girls are always so worried about these things. What I am, of course, worried about the most is that I might not have good results, and with the intensity of this cancer, this might be it.

I beat my 18 month prognosis on June 4th, but that also makes me realize that it might not be too far off. I was doing well mentally, and now the depression and worry has returned. P.U.! Please continue your prayers and good thoughts. I pray for all of you.

Gaile

June 2, 2008

The Latest...

Views: 183

Well here is a CELEBRATION! I was given an 18 month prognosis… 18 months ago. Well I am still here, so there!

I have been off of all treatment since the end of February. It has been an attempt by my doc to let me live my life somewhat normally for a few months. It has been great. I still sleep A LOT I could sleep about 20 hours a day if I let myself. My Fentanyl pain patches have been decreased three times. But… lately my pain is increasing and I am getting pretty nervous. I have a PET scan scheduled for June 17 to see what havoc the evil rogue cells have wreaked in my body while they have been left to their own devices. I see my doc on the 24th to get the news. Nerves…

My son is back from University of Hawaii with perfect grades including 2 A pluses while carrying 19 units. On September he leaves to study in Tokyo for 11 months. I worry so about not seeing him again. I told my oncologist I want to visit him in Japan next February when he is off of school. She said we will shoot for it. Now that is the kind of attitude I like!

My 19 year old daughter is turning out to have multiple mental problems. I am sure my condition isn’t helping, but these things have been going on for most of her life. We just haven’t been able to figure out what the problem is. She is very clever, manipulative, and stubborn so hides things well from her therapists, and me. Finally she is in a state that is no longer a secret. Her boyfriend, who I adore, is helping me to see the other side of her life, the one that only her friends see. It is answering so many questions and filling in the blank spots. I am praying I can convince her to see a psychiatrist. Her M.D. already told her he thinks she is bipolar. He put her on medication that seems to be making her worse. I tell you. She is so much like her father, who is still “hiding” his drinking, but is a little less high maintenance right now. As my mother always says, “If it rains, it pours”. No kidding.

I pray for the strength to help my family. I can’t imagine what will happen to my daughter without me. Her boyfriend has been trying to break up with her as she is such a drain on his life, but she is so unstable he is afraid to go. He can’t stay forever, and wouldn’t want him to. He has his life to enjoy. People keep telling me that my cancer is all about me. That I have to focus on healing and what I need. But I tell you, that makes no sense when you still have others that you care about who need you. At least I can’t spend all of my time wallowing in my own health problems. Life goes on…

Hope you are all finding strength and happiness in your lives. Gaile

April 16, 2008

And so we just wait... ?

Views: 376

As this adventure continues the roller coaster becomes steeper. The inclines are longer and thus the anticipation creates more anxiety. The declines are faster and thus more frightening.

There is always good news, still, except there is ALWAYS a “but” attached to how those test results read. In March I had been off of my third line chemo for 2 weeks. I had a PET scan which showed some great news indeed. All of my liver tumors were cold. I had started with 4, in January there were two, and March, none! Both of the tumors in my left pelvis were cold. My spinal tumor indeed was also cold. No activity in these guys!

“But”, of course, there was a new spinal tumor, a new nodule on my lung (my lungs had been clear of any cancer since my first line treatment over a year ago). The large tumor in my right pelvis (which had appeared in October and doubled by January) was not responding to the chemo (but was no larger).

So, the question was, “Is this a new primary tumor? A new cancer?” (I am reviewing here what I wrote before to make this more cohesive. I know when I read other people’s blogs I can’t remember exactly what happened to them before and have to go back and read them.) I asked my doc what we would do about this persistent devil. She said, “Nothing, you have lung cancer”, as she gazed into my eyes with moisture in hers. She told me I was not a candidate for a hysterectomy, as I had lung cancer. I protested that if this new cancer was a threat to my life why weren’t we going to go after it? She gave me another of those looks. I told her I wanted it diagnosed so we would know exactly what we were dealing with. She placated me with a compromise. She said she wouldn’t do a biopsy but agreed to an MRI/CT to try to diagnose it. So a week later we did that, in conjunction with my 3 month follow-up brain scan. My brain scan was still okay, no change.

Now, to the new news… here is the strange part. The pelvic scan showed the pelvic tumor, which was shown actually to be in my endometrial wall, was not active. In the PET scan, one week earlier, it lit up like a Christmas tree. So, my doc was comfortable with the pelvic scan results. I, on the other hand, was perplexed and as usual, not comfortable.

So, we wait, she says with no activity in the tumor there is nothing else to do. She has given me a further reprieve from the discomforts of treatment. Time to enjoy the Spring and my family. I have been off of treatment since February. And will not see her until the end of May.

I went ahead to Hawaii for a week with my 19 year old daughter. My son who goes to school on Oahu flew over to Maui to see us and spend the weekend of his 21st birthday with us. I miss him greatly and it was wonderful to see him. He will be going to Japan in September to study abroad for his junior year and won’t return until the following August, almost a year. I pray I am well enough that I can fly over to Japan to visit him. Our Maui trip was relaxing and I escaped the routine of being living with cancer, and we got away from the negative vibes of my husband! I wanted so to stay and pretend that was my life…

I will have a followup PET scan the beginning of June to see what surprise has been growing inside of me while I innocently go about my life, wondering each moment what might be lurking within. I am the matron of honor in my best friend’s (second) wedding in July and will also celebrate my 56th birthday. I plan on attending my first (for me) high school reunion. A picnic for a whole decade of graduates. So I am setting goals, and events in the future. Things to look forward to, to plan for, to live for. I pray I will go to Japan in February of 2009.

The reality is, I was given 18 months to live, 16 months ago. I KNOW I will pass the expected prognosis. I intend to pass it by a great margin. I am not working, which is tough financially, but have decided to take an Accelerated Death Benefit from my life insurance policies. For those of you with a prognosis of 12 months or less, this is a great way to keep afloat during this tough time. You can get 50%, or sometimes 75% of your benefit – penalty and tax free (in most cases). If your doc attests to the prognosis, they just send you a big fat check. And if you are still kickin’ after the 12 months, they assuredly aren’t going to make you pay it back! I was in a panic that we would have to hurry and sell our house (in this lousy market!). Now I can relax a bit while we live off of my life insurance. It will still leave the 50% balance for my family after I am gone.

So instead of frantically packing and cleaning my house, I will find ways to treasure my family and the seasons I have left. I pray my results in June are not too terrifying, and that there may even be a miracle. But while we wait, I feel good. My fentanyl patches for pain make me very sleepy, and I really could sleep 24 hours a day, but I fight it. Some days I do, just sleep. But I am thankful that each day I awaken to a list of things to do, whether I do them or not. I still spend time caring for my parents who are 90 and 83 years old. I just got my father through pneumonia, and both of them through food poisoning. So I am still useful. Without purpose you have despair. I help them with their medications and doctor appointments, and run them to the E.R. and urgent care as needed. I babysit my niece’s 6 month old daughter on occasion. I visit with many friends and am getting to know my older brother again. And of course there are my two wonderful and challenging children. There is so much to enjoy. See, I am no longer whining, I knew this would pass, for now.

I promise myself to live in the present as my past is but a memory and my future but a dream. My only reality is in this moment. I pray we all have extraordinary moments, and don’t ever consider that we are waiting.

March 6, 2008

Results Today

Views: 576

Thank you so much, AGAIN for your support and comments. I feel though we are strangers in cyberspace, we are connected by our hearts. Jill, this site was a wonderfully giving idea. I hope you know how many lives you have touched and changed for the better. You are an angel here on earth connecting a bunch of other angels.

Today I got my PET scan results after finishing my most recent 6 cycles of chemo. I went in so miserable as my husband came with me and I had wanted to talk to my oncologist alone. Last night when I wrote my last post he had provided me with an evening of tears and fears. I hadn’t slept much and woke up very depressed.

Much of the results were good. My liver tumors are gone. My spinal tumor had not changed, it is still small. Then the rest… I have a new lung nodule, small, but definitely new. My lungs had been tumor free for almost a year, since my first chemo. I also have developed a tumor which showed up for the first time 2 months ago on my last PET scan. It is on the outside of my uterus. It is large and causes me pain. It doesn’t respond to the chemo I have been on. My doc says that I am not a surgical candidate for a hysterectomy because I have lung cancer. If that were my primary cancer and I didn’t have lung cancer, I would definitely have the surgery. I was so upset. I felt like that was my death sentence. My, “We’re so sorry but you are going to die anyway, so…” I started to cry. So my doc agreed to an MRI to diagnose what it is. It is believed to be another primary site and not related to the lung cancer. She (my doc) said that after we have the results, we can talk about it some more. I kept telling her that I am worried that if it is something important and we ignore it, what will happen. She just kept staring at me with sad eyes as if to say, you don’t get it do you? It won’t make a difference.

My husband walked out of there saying, wow, that was great news. Aren’t you relieved? He and I walk on different planets for sure. He says I am too negative and that he tries to look at the good stuff. He criticizes me for my fear, and acts superior because I look at the the negative. How does that help me? After we left my doc’s office, my husband went to take a business call on his cell phone. I was sitting waiting for my new appointments to be made when my doc walked by. She came over and put her hand on me and said, “It’s something else isn’t it? What else is going on?” I pointed toward my husband. She told me to call the counselor. And of course I will.

My daughter and I leave for Maui in a week, and I will see my son for the weekend while we are there. It will be his 21st birthday. No husband. And we will be staying with one of my favorite relatives. My former sister-in-law. She was married to one of my brothers 30 years ago, he died at 28 and they had a 3 year old son. She has remarried, but is still like a sister. She and her husband are wonderful. I can’t wait to go.

I have always been so up and positive. This depressed state is so new to me. I am on an antidepressant which has helped some. I would love to push this out of my head. No matter how busy I am, or what I am doing, “it” is always there. Are any of the rest of you able to push it out of your thoughts? My life is so upside down, not going to work anymore, much less money, medical bills and hassles with them, having to sell our home, losing lots of money on it, worry, worry about so much. My husband not taking on any more responsibility. I want a way to enjoy each day, to live in the moment, to appreciate what I have… I am confused as to why I can’t access these feelings. Anyone have any secrets? I am usually the one giving the advice, so this asking for help is new too. I do not want to be pathetic. I wanted to do this with such grace. I appreciate you all. I pray for all of us and our families. Thank you for hanging in there with me. I imagine I will be less whiney soon. Love to you all. Gaile

March 5, 2008

Thanks for the nice comments

Views: 593

My kids are indeed wonderful. But my husband is very unstable. He is around, and helps as best he can, but he is very high maintenance. He is the cause of most of my stress, and I hate when I consider that I may have gotten sick trying to deal with him and by holding the years of anxiety inside where the cancer cells were fed by this. I am trying to be thankful that he is present, and I look hard to find the positive… but his behavior reminds me everyday how miserable he makes me. I used to go to work every day and escape. But now I am home all day with him and feel trapped by the madness. I have way too much time to think about the mistakes I have made, like staying in this marriage for so long. I was getting ready to leave him right before I got sick. My entire family and all of my friends knew, as I was preparing them before I did it. Then I got the diagnosis, and never went back to work. And never told my husband. So here I am. Stuck, and feeling guilty.

February 28, 2008

I rarely update here...

Views: 632

Hello all of you remarkable people!
I am going to try to change my habits. I usually respond to other people’s updates, but never write my own blog. I shall attempt to do better. So this is WAAAAAYYYY too long. But I don’t journal anywhere else. Once I unload here, and thus feel cleansed, I will write more often, and I promise much much shorter.

My prognosis (I know, don’t scold me for using that word) was 18 months, 14 months ago. A year ago I was using a walker and a wheelchair due to bone metastasis (as well as many other sites). I have been fighting the fight with almost constant chemo, some worked miraculously well, some was a complete dud. I had gamma radiation to my brain this last December which was completely successful! I started a new infusion regimen in December also, and just finished up 6 cycles of it. It was 3 days in a row every 3 weeks. My markers continued to rise, but more slowly. My last PET scan showed improvement. Two of 4 liver tumors are gone, the other 2 shrunk some. Two of 3 pelvic tumors are gone, one is perhaps a new primary tumor, but I am not thinking about that. My spinal tumor left, but there is a new much smaller one. Everything else has fled my earthly container. That was just before my last two treatment cycles. So, next Monday, on our 24th wedding anniversary, I have another PET scan to see where we go next. I have a brain MRI/CT scan the following week to check if my noggin is still clean.

I FEEL WONDERFUL! I can walk quickly up 3 flights of stairs. Yes, I am bald for the second time, but I have been off of chemo for 3 weeks and feel like a normal person again. I had two units of blood 4 weeks ago, It seems I was a bit short of RBCs and platelets, as evidenced by my sleeping for 10 days (and nights) in a row. The sun is shining in Northern California, finally. And it has made a world of difference. Now those of you in harsher climates needn’t comment. I lived in Chicago for 11 years, Milwaukee, and Boston. Also 13 years in rainy Oregon and Washington. And yes, I was addicted to downhill skiing. So I do know about cold. But I am 55 now and prefer a milder climate. It’s funny that I am freezing when it is 55 degrees now. I do remember when I managed to survive wind chills of 40-60 degrees below zero. What a lightweight I have become. But I’m good with that.

I have been to Hawaii twice since I have been sick, and will go again for a week over Spring break. I am going to spend the time with my 19 year old daughter on Maui at my former sister-in-law’s house. My son and I did the same thing last spring, where I was unexpectedly blessed by the Dalai Lama! When I got sick my “Bucket List” included a week of special time away one-on-one with each of my two kids. So that is almost complete.

My son, who is at school on Oahu will fly over to Maui just for the weekend to celebrate his 21st birthday with us. I am so excited to be with both of my kids, away from all of the craziness of the last 14 months. No treatments, docs, or tests. Just the 3 of us, having fun and enjoying each other. This is heaven to me. And you can’t beat the weather, the lush jungles, the gentle waves and warm sand. So healing, mentally and physically.

I will see my doc right before I leave, so I will know my results. But I can’t imagine anything ruining my trip.

I have been buying audiobooks for my iPod and have found it to be the best therapy for me yet! They are helping me to focus more on being present now, meditation, and peace. All 3 of these have been huge struggles for me, but I am learning. I don’t tire as easily listening to the audiobooks as I do reading, and I don’t nod off after a page and a half!

Are any of you joining Oprah on March 3rd for the Eckhart Tolle 10 week webcast/class on learning your life’s purpose? His previous books are wonderful for teaching us to be present, now, and living a life of inner peace. My husband and I both signed up and are going to do it together. Also, try some of the books written by Ram Dass (especially you Baby Boomers who went through the psychedelic sixties). He is a bit older, but has dedicated his life to working with death and dying. He has had a stroke himself and really gets the experience of dealing with suffering. I met with him on Maui and he told me that the three things I needed to focus on were living in the now, concentrating on breath work (my breathing), and listening to my heart. Sounded easy at the time…

Life has thrown us all a big curve ball. And of course there are the additional issues that arise from the dirt, spinning out of the arc, created by the ball as it hurls through the air. Such as not being able to work, so we have to sell our house even though the equity in our house has dropped $175,000 in a year and a half and it is such a lousy time to sell! Such as my not having the energy or strength to clean out our family home of all of the mementoes of a family lifetime. Such as my having completed TWO graduate degrees right before I got sick so my salary would increase, never getting the monetary benefit from it, and still having to pay on the student loans. Like fighting constantly with the insurance companies and doctors offices about coverage, billing mistakes and discrepancies.

But as Sue so eloquently stated in her 2008 New Year blog, there is SO much to be thankful for. There are my two fabulous kids, who by God’s grace ended up at home with me (unexpectedly) while I was at my sickest (for over a year). A husband who works at home, and even though he usually travels a lot, his schedule changed dramatically so that he was at home when I needed him. A big brother who leaves work early EVERY WEDNESDAY to spend time with me. We talk, go to coffee, shop, eat dinner, and if I’m sick he sits on my bed and we enjoy just being together. My parents are both still here at 90 and 83 and we have had the chance to share so much love and memories. I have more friends that I ever imagined and they are such remarkable people that I am honored to know them. My best friend has become more like the sister I never had, but always wished for. And I will be her matron of honor at her wedding in July!

I have miraculously reconnected with multiple high school friends (who live all over the country) from 40 years ago, which was an out-of-the-blue shocker! My husband had bunches of frequent flyer miles and hotel points so we could actually go to Hawaii which I love so much. My niece, who is like a daughter to me, had a baby girl 5 months ago and and they are both bright lights in my life. I have discovered such wonderful things about my kids, and they have discovered wonderful things about themselves too, throughout this journey. I have put on the breaks and now take time to smell ALL of the flowers, and even the litter box (we have 3 cats, and a smelly dog).

I have, as Sue pointed out, had time to put my affairs in order, try to teach my husband how to handle our bills, taxes, etc. And sort out family heirlooms. So many people don’t have the time, as there is no forewarning that this journey is over. If you see/saw “The Bucket List”, a line that I very much appreciated was uttered by Jack Nicholson’s character while staring in the bathroom mirror during his hospital stay. He had just finished being very intimate with the toilet bowl after chemotherapy… “And some lucky guy somewhere just died of a heart attack”. True, but I would bet he didn’t have time to tell those he loved, just how much.

Boy do I feel cleansed, almost as if I have had a high colonic. ; >o

If you stuck with this all the way through, hooray for your patience, and thank you for being a part of my life.
Bless us all for our strength and courage. I pray we can all live for THIS moment as it is all there really is, and look around… isn’t it miraculous?
Gaile

Jill – how do we contribute to the running of the wonderful site?

October 17, 2007

Oh My, 2nd Line Didn't Work, On to 3rd Line and Gamma Knife!

Views: 1234

My first line of chemo, 11 months ago, was very difficult, but the results were amazing. I was on Taxol, Carboplatin, and Avastin. That was Dec. 2006-March 2007. My tumor marker from my lung cancer started at 2000, at the end of chemo it was down to 14.5!

Then I joined a clinical trial drug that almost killed me. That capsule (Tarceva, also known as Erlotinib) landed me in the hospital for 8 days with interstitial lung disease. I then took a 6 week break from all chemo to heal my body. I went back onto Avastin which is one thing I had been on from the start. My tumors were once again growing. Some were not recurring, some were larger, and some were new. So I started on 2nd line therapy, still on Avastin, adding Alimpta, 4 cycles. I started getting dizzy spells at the end of the therapy so my doc ordered a brain MRI. And yes, 2 brain tumors. I then had a PET scan where my 2 liver tumors had become 4, my one pelvic lymph node had added 2 tumors for company, and my spine had developed another tumor. My tumor markers are slowly climbing, now at 370.

So yesterday I started 3rd line chemo: Carboplatin (again), and now VP-16. I will have Gamma Knife surgery to my brain tumors next week. I feel great, but just tired.

I am not a smoker and find people’s attitudes toward my lung cancer to be one of disdain. They assume all lung cancer to be self induced by smoking. There is little pity. No one believes I am not a smoker.

My doctors are ALL wonderful and I feel I am in superb hands. Sutter Cancer Center in Sacramento is an amazing team. The physicians are impressive, each member of the team who I have dealt with has been extraordinary. My doc is Dr. Ong and she is brilliant. All of the staff in all departments are kind and supportive. The Gamma Knife staff is of the same high caliber. I highly recommend this facility to anyone in Northern California.

Wish me luck, please, put me in your prayers. I was blessed with 6 wonderful months from April through September to enjoy travel, family, and friends. I was even blessed by the Dalai Lama in a stadium of over 10,000 people on Maui. He walked right up to me (to the terror of the Secret Service and the SWAT teams protecting him) held onto my hand with both of his and said a prayer over me. I was stunned and thrilled, and indeed felt blessed.

I am hoping for some more time. My kids are 18 and 20 and just beginning their college lives and dealing with some health problems of their own. Last Thanksgiving, when I was diagnosed, I was given 18 months to live – with chemotherapy, 6 months without. I have made it 11 months so far but the tumors are growing and invading faster now. My parents are 83 and 90 and terrified, they depend on me so much. My husband is not self-reliant and can’t even pay a bill or manage a budget. I have some more training to attempt with him. We also need to move as without my income (a third of our total) we can’t stay in our present home.

I feel this chemo and radiation with be effective in giving me some more time. I really do feel it. I pray that all of you reading this have good results and are given what you need, be it full recovery, or time to close your life in a meaningful way.

Love to you all. May we all develop the strength we need and find the love and support we require to make it through each moment. Remember to live in THIS moment, it is all we really have. The future has yet to happen and the past is gone. There are no “re-dos”. Make each moment count.
Gaile